National Renal Advance Care Planning Project
One of the priorities of the Welsh Renal Clinical Network (WRCN) as outlined in the Renal Delivery Plan (2016-2020) is to ensure that advance care planning (ACP) is promoted and facilitated effectively within renal services in Wales. This process can facilitate autonomy around the future wishes for people with Chronic Kidney Disease (CKD) once they can no longer decide for themselves.
People with CKD have a gradual loss of kidney function over time and are at a greater risk of death than of people with the same age and sex with healthy kidneys. The risk increases as the disease progresses to end stage renal failure (ESRF).
The majority of people with ESRF will choose a renal replacement therapy (RRT) dialysis or transplant. However some will make an informed decision to forgo RRT and opt for maximum conservative management (MCM) which is active supportive care. A small proportion of people choosing MCM will progress to develop symptoms of ESRF and will require timely access to palliative services. Again, similar to MCM, some people established on RRT may decide that the burden of treatment, physically and psychologically outweighs the benefits and make an informed decision to withdraw treatment.
Effective ACP within renal services will enable people to consider challenges that they may face in the future, removing decision-making from an emergency situation, where all the relevant information may not be available. It’s important to give people the opportunity to tell health care professionals (HCPs) what is important to them.
What has been achieved?
- Within the Renal Delivery Plan, Conservative management and end of life care service specification incorporates ACP.
- Establishment of National renal conservative management work stream (ACP included) with a dedicated focus group including patient representatives, renal MDT, palliative and WAST care teams.
- Delivery of a National Renal ACP education programme to upskill HCP’s, so that ACP is embedded as an integral part of holistic care. Patient representatives from renal charities (Kidney Care UK, Kidney Wales and the Paul Popham Befriending Service) also attended training, enabling a collaborative approach to raising awareness. The education is facilitated by the WRCN and ACP specialist nurses.
- South Wales Renal Module accredited by Swansea University established in 2018; ACP is part of the curriculum
For completion during 2019:
- Plan to re-establish North Wales Renal Module and include ACP into the curriculum.
- Plan to develop a national renal serious illness conversation education programme, again to upskill HCP’s.
- Plan to raise awareness among people diagnosed CKD people via national roadshows and posters etc. that will be on displayed in renal dialysis units (RDUs).